Look, Julia Roberts is here today.
The other Julia Roberts. This Julia deserves an Oscar for an outstanding performance in a supporting role (the most supportive ever): motherhood. (I know, I know, I can’t be the first to make this analogy, but I couldn’t resist.)
Julia’s story is as inspiring as it gets, somebody should make a movie out of it.
Julia Roberts married into the name. In case you didn’t know, (the famous) Julia Roberts will not call your establishment to make her own tire rotation appointment or to argue about her cell phone charges. To make matters worse, this Julia Roberts husband’s name is Julian. They own a marketing firm together. They know. It’s a bit much for them, too. A geneticist’s dream, they produced two cute kids with a rare syndrome that includes a vision disorder and a crazy kidney disease; resulting in weirdly moving eyes and kidney transplants for both at age of 8. Julia speaks to groups on topics about navigating life as a special needs family. She blogs at Kidneys and Eyes and created a social networking site for special needs families, Support for Special Needs. You can find her on twitter as @juliaroberts1
This story has potentially triggering content. Please take a deep breath and turn on the self-kindness for this one.
This is an important story that needs to be told and heard, but if you are feeling vulnerable today, it may not be the best thing for you to read just now. Come back later. More on the PT- emotional safety structure right here.
Letting go of the lies
“I can’t do it! I’m a horrible parent for him! He could live anywhere with anyone and he’d be better off! He could have ANY mother and it wouldn’t matter, it doesn’t matter that it is me.”
I said through muffled cries to my husband sitting on our filthy kitchen floor as he was holding me. I’d collapsed, horrified to admit those feelings aloud, but it was no secret, I’d been feeling inadequate to parent for months.
We had just come downstairs from my son’s bedroom, making sure he was asleep and safe, which was our ritual each night for over a year. He was on our version of Suicide Watch; our goal being to create the smallest possible window of time he was alone. I would go to bed around 3:00am and my husband would wake at 6:00am, I would get up around 7:00am, my husband would go to bed around midnight and we’d do it again.
At age six, Autosomal Recessive Polycystic Kidney Disease (ARPKD) had robbed him of kidney function, feeling well, and being a regular kid with a chance to grow and learn. He had debilitating depression and PTSD as a result of his many medical interventions including a surgery he experienced awake, unable to move or speak, but should have been under anesthesia. He’d received his kidney transplant and a year later had spiraled into a dark place where he wanted to die and stayed there for months.
My nine-year-old grabbed knives and doubled-looped ropes around his neck. He hid under sink cabinets and in closets trying to disappear from the world, hysterical when we found him and lured him back into the reality that was his painful life. “Just kill me.” He said to us on a regular basis.
Only an inadequate mother would let things get so bad that her young child wanted to die, wanted her to kill him day after day and when that proved unsuccessful, to try to do it himself.
Those were just lies that exhaustion, judgment from other people and stress brought on, mocking me daily as I tried to improve my son’s life, to pull him out of a darkness that consumed us all. Nothing could be farther from the truth. Three years since we committed our son into a psychiatric hospital to keep him safe, I now have the luxury of looking back at the mother I was and I want to embrace her, give her peace. I want to tell her she did the best she could with what she knew at the time.
“You are exactly the best kind of mother for him. You never stopped looking for answers. You Never. Gave. Up.
“When he was raging and uncontrollable, you accepted him back into daily life without judgment or questions because he needed to know unconditional love.
“When you told him you would never stop trying to find a way to help him, he believed you, you just didn’t know it. You brought him back. You did that. Not a different mother. You.”
I didn’t do it alone. Our family was surrounded by a small group of people who supported us with love both off and online. Please don’t be alone when you’re on your metaphorical kitchen floor. Reach out to anyone at Mama’s Comfort Camp or anywhere for a safe place to land. Do not give up until you find it. You don’t have to feel alone. You’re never alone.
See? See? Her superpower is unconditional love.
If you need support while mothering children with special needs, please go to her website or reach out to her on the Mama’s Comfort Camp. You’ll be glad you did.
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